A decade of psychiatric misdiagnosis: reconstruction and reconciliation

How I got off of psychiatric medication

I’ve written bits and pieces here about how I why I withdrew from individual psychiatric medications. However, I haven’t provided the details of how I actually did it, how I worked with my prescribing doctor through the process, or why I chose to withdraw the way I did for each drug. Please don’t consider this any kind of “how-to.” Withdrawing from psychiatric drugs is dangerous, though not necessarily for the reasons psychiatry would like you to believe: that your original symptoms are returning, and that adverse events experienced during withdrawal are just reminders of the severity of your “underlying illness.” That may be true for some, but more universally and more pressing, no matter what the original reason for the prescription, these drugs cause profound changes in the brain and body, and to remove them, suddenly or slowly, causes further changes as the body readjusts to their absence. In general, in both academic settings and in my own experience of treatment, I have found that prescribers of these drugs are not aware of the possible severity of withdrawal symptoms, the breadth of possible withdrawal symptoms, or the appropriate time course for a sensible withdrawal schedule. In spring of 2003, at the end of my first year of graduate school, I was taking zyprexa, celexa, klonopin (only intermittently), and Tegretol. Drug by drug, here is how I got from this down to zero.
Zyprexa Withdrawal:

Original dose: 10 mg/day

How long had I been on the drug? about 1 1/2 years

Why did I choose to withdraw? Extreme concern about adverse events, particularly diabetes risk, especially given my extreme weight gain on the drug (30 lbs onto a previously slender 5’4″ frame), and risk of permanent movement disorders (tardive dyskenesia). I was particularly concerned once I learned the prescription had been overzealous off-label treatment of anxiety, which seemed like overkill once I knew the risks.

What did I tell my prescriber? I told her my health concerns. At that point I still believed I was bipolar and in need of heavy medication. I just didn’t want to be on zyprexa anymore.

Withdrawal Symptoms: I did not experience withdrawal symptoms until after the final drop, but after that they were extreme. Severe disabling tremors (holding a fork to eat was difficult), heart palpitations, panic attacks (I had never previously experienced these), crippling anxiety (far worse than the anxiety that led to the original prescription), insomnia, overall physical malaise, fatique, loss of ability to concentrate.

How long did withdrawal symptoms last? About 4-6 months after my final dose. There was some concern that the tremors might be permanent, but thankfully they faded. However, I do still have some tremors in stressful situations or with fatigue. I don’t recall such tremors from before drug treatment, but it is hard to say if this is truly permanent damage from the drug. At several points, my prescriber offered to reinstate zyprexa to solve my withdrawal symptoms, while fully acknowledging they were signs of physical dependence, not necessarily symptoms requiring drug treatment. I was so miserable I considered it, but I’m stubborn and stuck it out.

Unexpected fallout: I became heavily dependent on the Klonopin that I had previously used only occassionally in order to have some semblance of control over the anxiety that withdrawal induced. I also immediately lost all the weight I gained on zyprexa and more. I lost over 30 pounds within one month of my final dose. My period also returned to a more regular schedule. I hadn’t noticed how infrequent it was until it came back, and had never been informed that this was a common side effect of zyprexa.

What did I do wrong? I tapered the drug much much much too fast. Note however, my taper was far slower than that suggested by my prescribing doctor. 6 months, or even longer, would have been a more appropriate taper, and I would have ignored advice not to cut unscored pills. My final drop in dose needed to be much smaller than the smallest pill available for sale (2.5 mg).

At this point, I changed doctors, and my new prescriber was concerned that an SSRI (Celexa) was not appropriate. She weaned me quickly off of the drug and introduced lamictal. This change was uneventful, or perhaps it just paled in comparison to the zyprexa withdrawal.
Klonipin withdrawal

Original dose: 3 mg

How long had I been on the drug? Off and on on xanax or klonopin for four 1/2 years

Why did I choose to withdraw? I was heavily dependent on the drug after increasing its use during my zyprexa withdrawal. I found it no longer provided any relief, even at a fairly high dose (I believe 3 mg/day). I was growing suspicious that the drug was actually causing me increased anxiety between doses.

What did I tell my prescriber? Exactly the above. She was amenable to withdrawing the drug, I think because psychiatrists are trained to be cautious about dependence on benzodiazapenes.

Length of taper: About 6 months, very incremental drops in dose, timing drops in dose to correspond to school breaks or times of reduced stress. Until my final fraction of a milligram, I would remain at each newer low dose until my withdrawal symptoms abated. Near the end, this became impossible as the withdrawal symptoms were constant. I was on a tiny dose and decided to cut my losses and do the final withdrawal all at once. I believe this final drop was from about a quarter of a .5mg pill.

Withdrawal Symptoms: Crippling throbbing headaches that started at mid-day and lasted into the night.

How long did withdrawal symptoms last? At first, with each drop in dose the headaches lasted about a week, but lasted longer and longer as my dosage drop. Ultimately, the headaches lasted 2-3 months after my final dose.

Unexpected fallout: I became addicted to alternating doses of tylenol and naproxen in order to barely control my headaches, both taken at their maximum possible daily doses. I had to taper carefully off of these pain relievers several months after my final dose of klonopin. This much less dramatic withdrawal also resulted in headaches, but for a much shorter period of time.

Tegretol Withdrawal:

Original dose: 1000 mg / day

How long had I been on the drug? About 8 years

Why did I choose to withdraw? I didn’t want to be on drugs anymore. I had completed a solid round of Cognitive Behavioral Therapy, and was functioning so much better than I had when I was on heavy doses of drugs. I was growing suspicious that the drugs in general were doing more harm than good. I was starting to question the circumstances of my original diagnosis, and to wonder if I was capable of living without drugs.

What did I tell my prescriber? That I was concerned about long term effects of tegretol on my blood work (I had longstanding low white blood cell count), I was on a maximal dose of the drug, but my blood level was now below “therapeutic” (this happens with tegretol frequently, because your body gets better at efficiently removing it from your system over time), so it’s efficacy was likely minimal at best in any case. I was doing extremely well and was symptom free, and wanted to see if I would be fine on a single remaining drug (lamictal).

Length of taper: about 6 months, timing drops in dose to correspond to school breaks or times of reduced stress.

Withdrawal Symptoms: Increased anxiety immediately after each drop in dose

How long did withdrawal symptoms last? Not long, perhaps a week after each drop in dose, and about two weeks after my final dose

Unexpected fallout: I started to laugh again.

Lamictal Withdrawal:

Original Dose: 250 mg/day

How long had I been on the drug? About three years

Why did I choose to withdraw? I was healthier than I had been since childhood, both mentally and physically. I was deeply questioning the basis of my diagnosis and no longer believed I was mentally ill. I hadn’t had anything you could remotely call a symptom in 2 1/2 years, even with the stress of withdrawal.

What did I tell my prescriber? I was planning to try to get pregnant in one year (which was true), and wanted to be free of meds well before I tried, especially since I was doing so well, in order to make sure I was stable off meds prior to pregnancy

Length of taper: About 7-8 months, but two of these months were a pause in withdrawal near the time of my daughter’s birth (my wife carried and birthed our daughter).

Withdrawal Symptoms: Minimal increase in anxiety and slight insomnia.

How long did withdrawal symptoms last? A few days after each drop in dose, including the final drop in dose. My Lamicatal withdrawal was virtually pain free, though I count myself lucky, as I have read many horror stories about the stress of lamictal withdrawal.

Your article is inspiring but also frightening for me. I’m 65, yikes, I was diagnosed with Borderline Personality Disorder several years ago along with Bipolar. I also suffer from severe depression and OCD. All in all, I’m a mess.
I’ve been on Xanax for roughly 20 years, that’s amazing. I take 2mg a lot. Several months ago I was up to 10 Xanax at 2mg each per day. It has a very short life span and is highly addictive.
My memory is shot to shit. Really. I’ve voluntarily checked into psych hospitals within the last few years several times and left after a week. The last visit was in March, I wanted to get off of Xanax. They gave my Klonopan which didn’t seem to help me at all.
I’ve had Lamictal, 400 mgs per day. I can stop it tomorrow and will not notice any significant change. I’m still unclear as to why I continue to take it having said that.
I’ve had Celexa; didn’t help, Lexapro, tons of meds. I’m also non compliant. I’m scared of the side effects and agree totally with you about the damage they can cause.
There is one med, Symbiax, that put about 25lbs on me. It’s Zyprexa and Prozac in one pill. So I totally understand why you stopped taking it. Once I got off of it, I began to drop my weight as well. Friends said I was much better on it, but the weight thing got to me. But which is better – be fat and sane or be thin and nuts.
I’ve gone through clinics, private social works, therapists et al. I’m not able to afford private really and I’m so glad you were able to stop all of them.
Kudos to you. I would never be able to stick it out but I am researching places, again, for detox. God bless.
Gloria

I am a 65 year old woman heavyily addicted to Xanax for approximately 15 years. Prior to that, I was Valium for at least 20 years.

I’ve been diagnosed as Bipolar, Borderline Personality Disorder and I know I also have OCD.

I have seen many psychiatrists to no avail. In many ways, it is also my fault that no meds work as I’m deathly afraid of the meds and as a result, am non compliant. I start and stop meds just like that; all at once.

I cannot get off of Xanax. I usually take 8mg. of Xanax daily which is considered very high by all doctors but my body is somewhat desensitized to it and I need this amount just to calm down.

I live in the NYC area and am hoping someone will see this and suggest a good therapist for me to help with my addiction.

It’s all about money and my insurance only covers so much. I do not have the best insurance which limits me in choices. Psychiatrists are all about money, at least where I live.

I’ve also been in the psych ward of a well known hospital at least half a dozen times for short stays of around 8 days. I hated it so much there that I pretended to the doctors I was doing fine in order for them to discharge me. They put me on Klonopan and the minute I got home, I popped a Xanax.

Anyone out there who can help or is having this same or similar issues?

Thank you for telling me that I’m not crazy for rethinking my psych meds. I’ve talked to my regular doctor but next is my psychiatrist. I’ve already discontinued my clonazepam, which was a joke, with horrible withdrawal from 3mg. My psych MD didn’t pick up on the withdrawal and put me on busbar, I started losing my hair so I stopped it. Funny, all my symptoms gradually decreased to feeling much better. Now I’m working on Cymbalta. This has been a nightmare. Cymbalta gave me hypertension. One of my withdrawal symptoms was severely increased BP not to mention the numerous others. There are more withdrawal symptoms, many severe, than all the side effects of all antideppresants put together. Makes me wonder if the drug companies did this on purpose. Thank God I’m almost done, down to 15mg from 90mg. I didn’t plan on it taking this long. Next I want to get off my Tegretal. That I will talk to my psychiatrist about. I wanted to switch to lamictal but after reading your article I think I will wait to see if I need to. I’m not stupid I know what my diagnosis is and will be on the look out for any problems and will continue to see my psychiatrist. Thanks

Things learned:
after Seroquel XR 200mg. I should have taken
Seroquel XR in two doses and go down slower:
Seroquel XR 100mg/night + Seroquel XR 50mg/day

I shouldn’t have reduced Seroquel 100mg/night down to zero because it caused withdrawal to fail.
Instead I should have go towards zero in 6 months or so.

Also: It could be good idea to use Lyrica or Lamictal when going below 200mg so that excess glutamate released from serotonin 5-HT2A receptors (reopened from seroquel blockade) don’t hit so hard to neurons and kill them.

Hi
I have tried many times to get off zyprexa,but didn’t succeed. I have been on 2.5mg since 1999. I am planning to get off of very very slowly like a year by using water titration. It is a bitch of of a drug! Thank you for your post.

Tilting at Windmills…. Thank you for the most honest and comprehensive detail ever on the subject of withdrawal from Zyprexa… It is very inspirational and comforting to know that zero Zyprexa is possible… Indeed a brave step.. and a path currently pursued… Current dose is 2.5mg twice a day having reduced from 60mg oral plus intra-muscular injections of 20mg of the drug. Horrific side effects both physical and emotional… so glad to learn that laughter is part of the process of withdrawal. My blog http://freegarth.blogspot.com/